Greetings from Melbourne

[Trav_Aus_1970]

Hi all,

Just reaching out to the CLL community.

This is a great site and need help

I am a fairly fit 47 year old and 18 months ago I was diagnosed with Synovial Sarcoma in the palm of my left hand. I lost my index finger and had radiotherapy at the Alfred hospital in Melbourne, Australia.

I have just had my first yearly CT then PET scan which is thankfully all clear on the sarcoma.

However, the scan did show enlarged lymph nodes in my groins and the result said the possibility of lymphoma.

It was also picked up in a routine blood test 7 years ago I had a high lymphocyte count. They put it down to a virus but 3 years later it was still high. I did the flow test (forget exact name) and I was told I have MBL.

Questions for a newbie before I see the blood doc I was referred to by my oncologist (CLL ?)

1/ What is a high lymphocyte count ?

7 years ago it was 4 (I gather that is 4,000)

4 years ago 5.8

1 year ago 7.8

2/ Lymph nodes -

PET scan 2017 - 15mm in groin

PET scan 2018 - 20 mm in groin

No other lymph nodes enlarged, no other cancer

3/ I gather the immune system is working overtime with CLL. Add in a full time job, family commitments and general stress dealing with cancer (anything I went through with sarcoma) how do you handle CLL and the watch and wait ? Must be a massive drain on the energy bucket

If you can spare a minute to help me out it will be appreciated

TC

Trav

[Cllcanada Top Poster CURE Hero]

Welcome from🇨🇦

You have one of the top CLL specialist at Peter Mac... it would be worth the trouble to get on their CLL program.

petermac.org/users/assoc-pr...

Lymphocytes count is referred to as absolute lymphocyte count [ALC], and it is a combination of B cells, T cells and Natural Killer cells.

CLL doesn’t really get going until the ALC crossed the line at 30,000 OR 30K line, so you have a very long way to go.. many years... looking at the counts at this point.

Our immune system function poorly, and the malignant B cells aren’t doing their jobs... but we still have hundreds of thousands of good B cells, so its not as bad as it sounds... Add to this, the chemical signals in the immune system are out of balance, so they can trigger a sick response, which patients interpret as fatigue... although it is different.

CLL patients have an 8 times greater risk of skin cancers, keep up your dermatological surveillance.

Adopt a philosophy of getting immediate medical attention for everything, the days of waiting for illness to get better by themselves are now over...

I’m a 20 year CLL patient.. its a long marathon not a sprint...

All the best...

~chris

[Trav_Aus_1970 in reply to Cllcanada]

Thanks Chris

[Trav_Aus_1970 in reply to Cllcanada]

Hi Chris

I was discharged to be monitored by my GP every 6 months. You were correct, I have a long time to wait. When ALC hits 20,000 I will then monitored by specialist again.

Thanks for "heads up" about skin cancer. I love the sun and beach.

Time to get stuck into my bucket list !

He did mention some people have success with tumeric without recommending it.

Trav

[very]

HI, Trav my husband was 53 when he was diagnosed and 19 yrs on w&w in that time he remained fit and well just reduced his hours at work to 5days a week he retired at 65.He had chemo at 72 and is now is 22months post chemo and back to full fitness again.My advice is to try to keep as fit as you can unless C L L raises its ugly head to carry on with life as normal.Trav always you check with your doc if you feel unwell and its something you cant shake off, I have a saying when in doubt shout.

Very

[Trav_Aus_1970 in reply to very]

Thank you very

Appreciate yourself and Chris' wisdom.

Your husband is a great man ! He is also very lucky to have your loving support. My oncologist said a loving partner is very important to me on Wednesday and studies prove this helps. If of any interest he did also say keto is good for losing weight (not cancer), acupuncture and meditation help

[PaulaS Volunteer]

Hi Trav,

Welcome to the site.

You ask (amongst other things), how to handle Watch and Wait... Such an enormous question..

But you might be interested in the following post. It’s a collection of “Things We Can Do" to help our journey with CLL

healthunlocked.com/cllsuppo...

They’re not complicated things– just practical suggestions based on the experiences of many people on this site. As you read, you might note down things that are particularly relevant to you, and are worth taking action on.

You might also find it helpful to go through the list with your family or medics, so they can support you through any actions you might want to take.

best wishes,

Paula (in Sheffield, England)

[Trav_Aus_1970 in reply to PaulaS]

Thank you Paula

Perfect